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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Monday, March 24, 2014

How to feel?

Never having been in a situation we are facing, I sometimes try and wrap my brain around what is going on and the enormity of it all. Because, let's face the reality of it, my little son needs a new heart. This can't be purchased, created, or generated in any fashion. This requires a gift... A choice, rather... It is for a family in their most vulnerable and incredibly difficult moment to make a choice that has to be extremely selfless. This heart has to come from a child the same size as Gator. They could be a little older or a little younger. This heart could come as a result of a tragity or accident. It could come from a boy or a girl. It could come from any race. These things are so minor compared to the action by which this heart will become Gators... LOVE.. Someone out there loves their little person as dearly as I love mine. They understand that love won't take away all the sadness they feel, but in some way we plan on filling the cracks of their broken hearts with all the love and gratitude we can.

Gator is already so blessed.. I feel like he has had so many incredible opportunities. Some people live long life's and don't get to experience as many wonderful things as he, and we, as his family have.

He has a little friend who wanted to help him. Friday the boys had a play date scheduled. When P showed up to the house he was carrying a ziplock full of cash... "Here, this is for your new heart... I have been doing jobs and this is all my tooth fairy money too. I get two of these for each tooth.(points to silver dollars). I lost 5 teeth so far. But, I am still gonna do more jobs to get more!" Everything this sweet six year old had earned was in that ziplock and handed over to his friend. I didn't want to take it because that was hard earned and carefully saved. I also felt like I couldn't turn away his desire to help. I learned a valuable lesson from this friend. I should give as much as I can. I wish Gator understood things like this better but he is still young. I understand and I will do my part to teach my family.

Wow that was heavy... On to the lighter part of this post.

I got some new fancy colors for the next holiday.. Off went the green for St. Patricks...

Now on to pastels for Easter...

My grill is gonna be so awesome! Plus, I am pretty sure I have the nicest Orthodontist ever!

May is so busy lately.. She is a whirlwind. She is talking up a storm and is finally talking like a Homer. Each day she comes up with a dozen new words and it amazes me the rate at which she is learning things. She refused to sign. I have tried on many occasion to have her sign but she just looks at me like she has no clue why I am making motions. I don't want to give up just yet... But, maybe she just won't be a signer. Some of the words she uses and well are...

Mine

Stinky

Ouch

Eeeewww

Ry

Go

Baba (drink)

Stuck

She had to learn the last one because she calls out to me when things like this happen. Notice how many times her tubing is wrapped around the leg of my entry table?

She is so yummy, even if she is tricky with her tubing.

Eden has been in heaven since we purchased Frozen. It has the same effect on her as Little Mermaid did on me. She is my best hug!

Gator had another infusion yesterday. It turned out to be a really fast one. He hasn't had any nasty side effects with Retuximab. I am hoping his 2nd go with IVIG goes better. That will be next Sunday to Monday. Monday morning he has clinic... Then Monday afternoon May has her last Synagis.